The newest research about living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS)/fibromyalgia, with personal observations
(the most pertinent parts of long articles will be highlighted for the reader)

About The Author

On March 4, 1988, I was diagnosed with Post-Viral Syndrome, which CDC soon decreed had to be referred to by the silly name "Chronic Fatigue Syndrome". My symptoms definitely traced back to a severe flu-like illness with a 105 fever for several days in mid-February 1987.
Despite relapses and increasing symptoms, I continued to work full-time as a legal secretary/paralegal -- even when I had no Quality of Life because I had to spend every non-working hour in bed so I could work the next day -- until February 2000, when months of severe sleep disturbance and ever-increasing symptoms (due to sleeping 2 hours or less a night due to the pain) cost me my job.
The doctors and judge didn't want to hear about failed attempts to return to work; they just assumed I don't want to work. "Don't confuse me with facts, my mind is already made up."
Since ADA will not force an employer to provide the accommodations I need, I started my own business so I could lie down whenever I needed to. I do proofreading and editing from home.
Visit www.CFSfacts.org or CFS Facts at YahooGroups or on Facebook if you want to learn the truth behind the myths.

Vivienne Mills, from the Colchester ME Support Group, recently visited Dr Betty Dowsett in her Nursing Home. Vivienne reports that Betty looked a lot better than when she last saw her at Easter time this year and took her for a trip round the grounds of the Home in her wheelchair. On 19th September it will be Betty's birthday and we hope that some people who know Betty will want to send her send a card. Vivienne has kindly offered to collect and take the cards to Betty at the Nursing Home.Cards can be sent to Betty via Vivienne Mills at: Mrs V Mills, 24 Hills Crescent, Prettygate, Colchester, CO3 4NU.

Dr. Dowsett is responsible for the following useful advocacy information:

WHAT ARE THE LATE EFFECTS OF ME? Most doctors with substantial experience of examining these patients would agree that the outlook for any individual is unpredictable. Case records need to be kept up to date for prolonged periods because patients who have remained clinically stable over 40 years or more and have worked normally for most of their lives are still subject to significant late effects. These include: overwhelming fatigue both physical and mental; cognitive disturbances; muscular and joint pain; muscular weakness and wasting; difficulty with breathing; episodes of hypothermia and low blood pressure; problems with swallowing and voice production as well as sudden attacks of breathlessness while sleeping. The similarities of these symptoms to those complained of by sufferers from the Post-polio syndrome, is striking and requires further explanation.

Successful immunisation against only 3 polio viruses among some 69 enteroviruses currently in circulation is deemed to have solved all problems!

WHAT IS THE POST-POLIO SYNDROME? [5,6,7] Poliomyelitis is an acute enteroviral infection with a wide range of clinical manifestations and multi-organ involvement (a fact which was frequently overlooked by physicians dealing with large numbers of dangerously paralysed patients, between 1940 and 1950). 95% of people who contract the infection remain symptom free or suffer only a trivial non-specific respiratory or gastrointestinal illness as in ME. Some 5% of those contracting the minor illness develop muscle weakness or paralysis before more serious or fatal complications supervene. The diagnostic distinction between "paralytic" and "non-paralytic polio" was entirely arbitrary in the days of the big epidemics. In fact, the category of "non-paralytic polio" contained many patients with mild or temporary paralysis and with encephalitis, which occurs in patients reaching the later stages of this illness. Modern studies indicate that overt paralysis in these patients depends entirely on the percentage of spinal nerve cells destroyed. For damage to be visible as weakness or paralysis at least 50%-60% of the nerves controlling muscular action must be damaged or destroyed. Thus, patients with less damage who may only have had a minor illness, and some who were asymptomatic can still present many years later with a classic Post-polio syndrome. Recent publication[6,8] of this information (originally derived from studies made in 1955) has resulted in a re-definition of the post-polio syndrome and will certainly include many patients currently seen in ME clinics.

IS IT POSSIBLE THAT MANY PATIENTS DIAGNOSED AS HAVING ME ARE SUFFERERS FROM AN ILLNESS CLINICALLY IDENTICAL TO "NON-PARALYTIC" POLIO? [6,8] Yes, undoubtedly! This is an important question with fundamental implications for further research into the diagnosis, treatment and prevention of both disabilities. Modern research published currently in a dedicated supplement of the American Journal of Physical and Medical Rehabilitation by the Editor and 3 leading research teams[6,8], indicates that part of the current difficulty in obtaining a clear diagnosis of the post-polio syndrome lies in the error of dividing acute poliomyelitis into "paralytic", "non-paralytic", "abortive" and "sub clinical" categories. It has to be recognised that there is a wide range of nerve damage in every patient. The Post-polio syndrome may therefore include: a. Patients whose nervous system damage was not clinically obvious at the time of diagnosis. b. Those who had minimal paralysis for a short period and were misdiagnosed as non-paralytic polio. c. Those patients suffering from infection due to non polio enteroviruses with potential to cause nervous system damage and the "Post polio" syndrome, equal to that of polio viruses e.g. Coxsackie viruses A9, A7; Coxsackie B viruses 1-6; ECHO virus 9; Enteroviruses 70, 71 - all of which have been implicated in outbreaks of ME or epidemics clinically identical to paralytic poliomyelitis. d. Patients with symptoms clinically identical to the Post-polio syndrome whose nerve damage arises from some other cause, for example, local muscle problems due to metabolic dysfunction, the effects of persistent virus infection, immune reaction to fragments of viral genetic material etc. It is essential that patients with clinical symptoms suggestive of Post-polio syndrome should be referred to a Physician to exclude other nervous diseases (eg, Motor Neurone Disease), and especially those which are treatable.

IS IT NECESSARY TO DIFFERENTIATE BETWEEN THE LATE EFFECTS OF ME AND THE POST-POLIO SYNDROME? [8,9,10] Not really, even if it were useful or practicable to do so at present, as the two conditions are clinically identical and similar in respect of neuroanatomical, neuroendocrine, neuropsychological electroencephalographic and other techniques, including brain imaging and molecular biology, as indicated by a remarkable series of research papers published by Bruno and colleagues over the past 20 years.

HOW MAY SYMPTOMS OF THE LATE EFFECTS OF ME AND POLIO BE EXPLAINED? [9,10] It has to be accepted that some degree of encephalitis has occurred in all these cases and that the areas chiefly affected include the upper spinal motor and sensory nerve roots and the spinal nerve networks traversing the adjacent brain stem (a nerve centre controlling all vital bodily functions which is always damaged). The most troublesome symptoms of both conditions are progressive muscle weakness, fatigue and pain, and the commonest cause of relapse over use of repaired nerve networks and an inappropriate response to physical or mental stress in combination with the increasing effect of normal aging. FATIGUE: This is almost always central and due to damage affecting the Reticular activating system (which keeps the brain awake and alert as well as maintaining some control over muscular activity). Fatigue is characteristically intermittent, but profound and incapacitating and related even to minor activity. [14]MUSCLE WEAKNESS AND WASTING: This may have a central cause (as above) or a local origin due to loss of motor units controlling individual muscles (including the breakdown of repair to these over time). Metabolic, immune or ongoing viral injury to muscle fibres, are other possibilities where infection persists. PAIN: This is a severe symptom which is difficult to treat and is usually due to dysfunction of the thalamus, an important sensory relay station in the brain stem. Failure to produce natural painkillers (e.g. endorphins and encephalins), may be an additional factor. INAPPROPRIATE REACTION TO PHYSICAL OR MENTAL STRESS: This also arises from injury to the brain stem which normally controls the production of cortisol (a steroid required for stress control) via the hypothalamus, pituitary and adrenal glands . In the absence of an efficient response, even minor stress can cause catastrophic collapse in these patients.

NB. Because of the many and varied symptoms arising from encephalitic damage to the brain, all symptoms reported, however bizarre they may seem, must be taken as possible evidence of organic disease.

MANAGEMENT: Despite promising reports from the USA of anti-enteroviral agents[18], and of Dopamine receptor agonists[9] (to correct some deficiencies in neurotransmission) no specific medical treatment is yet available in the UK and the main principles of management rely upon conservation of energy, reduction of stress, and simplification of manual tasks at home or at work. These objectives cannot possibly be achieved without financial and social support, aids to mobility, house conversions and suitable rehabilitation facilities. In the USA it is claimed that (with counselling, if necessary, for those who find such adjustments to life style difficult) 91% of patients will stabilise in view of the fact that, at this stage, the disability is only slowly progressive. Patients have to be cautious about drugs, especially those acting on the central nervous system including psycho-active preparations and alcohol. In general, these patients need less anaesthetic but higher doses of pain killers than usual and more time to convalesce from surgery. There are now many new options for muscle problems including modern orthoses and corrective surgery.

Some Immediate Steps that Could Be Taken[7,17,18,19,20]. These patients could be referred to NHS rehabilitation clinics and welfare facilities as for any other chronic neurological disease but physiotherapy must include exercise suitable for patients with some damaged muscle fibres which have been overused while others are normal and liable to deconditioning[7]. Separate "ME" and "Post-polio Clinics" are more expensive and often inaccessible. We should be educating doctors and paramedics now about the very common and seriously disabling effects of neglect

Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously![11,12,13]

"In the early 1990s, health insurers spent more than 90 cents of every dollar collected on patient care, but that has been declining. In 2007, national publicly-traded health companies spent about 81 cents of every dollar on patient care, according to a PriceWaterhouseCoopers report."

Sunday, August 30, 2009

My first encounters with medical entrenchment as it pertained to ME/ CFS came long well before I became involved in advocacy.

Having worked in an allied health field and growing up in a medical family I'd seen lots of cases of how entrenchment had impeded medical progress. But when I suddenly came down with ME/CFS I observed the depth of such entrenchment up close and far too personally. It had sunk its talons deep into my family and my day to day life. It changed my world as much as the illness itself did.

Not to blow a horn of behalf of my father, but in his day he was amongst the who's who of cardiology. At Johns Hopkins Hospital he had established the first pediatric cardiology department in the country. He later went on to see President Eisenhower when he had his heart attack, founded the International Cardiology Federation, was President of the American Heart Association, sat on the board of the Mass General Hospital, was very influential in Harvard Medical School...

One of my father's medical protégés, someone he probably treated more like a son than he did me, has had pretty good credentials also, but more on that later.

My point is that at the time my father was considered amongst the great medical minds. He was also in a position to be able to do a lot for ME/CFS.

He was the one that had insisted I be taken to the emergency department at the start of my onset -- everyone was convinced I had had either a stroke or a brain tumor given the symptoms I was having.

Two weeks later, and after 8 days of hospitalization during which every diagnostic test under the sun was done on me the verdict was in -- CFS, though I'd have to wait 6 months for it to be official.

It wasn't as if the diagnosis was coming from some renegade crazy doctor; the doctor was the head of Internal Medicine at Brigham and Women's Hospital and in charge of coordinating all research being conducted at that hospital and the Massachusetts General Hospital when the two merged, in other words an influential doctor himself. The doctor's name is Anthony Komaroff.

Right off the bat my father's attitude was CFS was a BS diagnosis, despite his seeing the symptoms I was having, all the test results obtained which revealed lots of irregularities and his talking it all over with Anthony.

Enter Stephen Straus from the National Institutes of Health, a distant relative by marriage. What Stephen did was add polluted thinking to my father's polluted thinking about CFS and my specific case of it.

Where my father went so went my family. Despite seeing how cognitively and physically crippled I was, and seeing all the abnormal lab results, the family thinking was "CFS is not a real illness" and I wasn't really so ill.

There was one more effort to get to the bottom of it. My father had me seen by his good friend Mort Swartz, Chief of the Infectious Disease at the MGH, Professor of Medicine at Harvard Medical School, member of the Institute of Medicine of the National Academy of Science, Associate Editor of the New England Journal of Medicine, Chairman of the Board of Scientific Counselors of the National Institute of Child Health and Development, and on the Board of Governors of the American Board of Internal Medicine. Enough of the credentials, but he was known as one of the greatest minds in the field of diagnostic infectious disease.

Credentials do not necessarily imply absolute enlightenment in one's field, but he was at least more objective than my father was being. After reviewing my entire medical record, conducting more tests on me and probably talking to Anthony he came up with his verdict. He couldn't bring himself to say I had ME or CFS, but at least he said, "seems to be having a viral illness of unknown etiology."

That too wasn't good enough to convince my family how ill I was -- apparently people with a viral illness get better so I could not be continuing to be as ill as I was saying I was. The invisible symptoms, cognitive deficits, flu-like symptoms, continual exhaustion... must have been 'all in my head.'

As hard as it was to face my family's betrayal that was not what really got to me. What filled me with resentment and embarrassment was that my father and in turn many of his close friends and colleagues were in positions in which they could have propelled ME/CFS forward into main stream medicine and greater acceptance. The way he treated of me was merely an act upon one person -- his denial that ME/CFS was real and his refusal to help get understanding of the illness and increased ME/CFS research into main stream medicine was an act of medical irresponsibility inflicted upon all people who have ME/CFS. That is what I could never forgive him for.

Oh, and that protege of my father's, Greg Curfman, has long been the Executive Editor of the New England Journal of Medicine (NEJM), purportedly the most prestigious medical journal in the country if not the world. The NEJM is by many in medicine to be as much of a gold standard as the Department of Health and Human Services, and yet it has continually and unyieldingly refused to publish anything about ME/ CFS.

So much for the credentials of medical prestige -- we have almost the entire field of medicine lined up against our illness and us. It's entrenched negative bias about ME/CFS is our Goliath. And the only sling shot we have to knock down that entrenchment is absolutely undeniable solid medical research.

But David has no stones. Unless the entire patient sector, their families and friends put their money where their mouths are to fund the kinds and amounts of research we need, Goliath is going to continue causing havoc within our ranks.

You've read the inflammatory rhetoric: now read the truth, dug out by an independent organization.

Twenty-six Lies About H.R. 3200A notorious analysis of the House health care bill contains 48 claims. Twenty-six of them are false and the rest mostly misleading. Only four are true. August 28, 2009

SummaryOur inbox has been overrun with messages asking us to weigh in on a mammoth list of claims about the House health care bill. The chain e-mail purports to give "a few highlights" from the first half of the bill, but the list of 48 assertions is filled with falsehoods, exaggerations and misinterpretations. We examined each of the e-mail's claims, finding 26 of them to be false and 18 to be misleading, only partly true or half true. Only four are accurate. A few of our "highlights":The e-mail claims that page 30 of the bill says that "a government committee will decide what treatments …… you get," but that page refers to a "private-public advisory committee" that would "recommend" what minimum benefits would be included in basic, enhanced and premium insurance plans. The e-mail says that "non-US citizens, illegal or not, will be provided with free healthcare services" but points to a provision that prohibits discrimination in health care based on "personal characteristics." Another provision explicity forbids "federal payment for undocumented aliens." It says "[g]overnment will restrict enrollment of SPECIAL NEEDS individuals." This provision isn't about children with learning disabilities; instead, it pertains to restricted enrollment in "special needs" plans, a category of Medicare Advantage plans. Enrollment is already restricted. The bill extends the ability to do that. It claims that a section about "Community-based Home Medical Services" means "more payoffs for ACORN." ACORN does not provide medical home services. The e-mail interprets any reference to the word "community" to be some kind of payoff for ACORN. That's nonsense.

AnalysisThis chain e-mail claims to give a run-down of what's in the House health care bill, H.R. 3200. Instead, it shows evidence of a reading comprehension problem on the part of the author. Some of our more enterprising readers have even taken it upon themselves to debunk a few of the assertions, sending us their notes and encouraging us to write about it. We applaud your fact-checking skills and your skepticism. And skepticism is warranted.Chain e-mail: Subject: A few highlights from the first 500 pages of the Healthcare bill in congress Contact your Representatives and let them know how you feel about this. We, as a country, cannot afford another 1000 page bill to go through congress without being read. Another 500 pages to go. I have highlighted a few of the items that are down right unconstitutional.

• Page 22: Mandates audits of all employers that self-insure! • Page 29: Admission: your health care will be rationed! • Page 30: A government committee will decide what treatments and benefits you get (and, unlike an insurer, there will be no appeals process)• Page 42: The "Health Choices Commissioner" will decide health benefits for you. You will have no choice. None.• Page 50: All non-US citizens, illegal or not, will be provided with free healthcare services.• Page 58: Every person will be issued a National ID Healthcard. • Page 59: The federal government will have direct, real-time access to all individual bank accounts for electronic funds transfer. • Page 65: Taxpayers will subsidize all union retiree and community organizer health plans (read: SEIU, UAW and ACORN) • Page 72: All private healthcare plans must conform to government rules to participate in a Healthcare Exchange. • Page 84: All private healthcare plans must participate in the Health care Exchange (i.e., total government control of private plans) • Page 91: Government mandates linguistic infrastructure for services; translation: illegal aliens • Page 95: The Government will pay ACORN and Americorps to sign up individuals for Government-run Health Care plan. • Page 102: Those eligible for Medicaid will be automatically enrolled: you have no choice in the matter. • Page 124: No company can sue the government for price-fixing. No "judicial review" is permitted against the government monopoly. Put simply, private insurers will be crushed. • Page 127: The AMA sold doctors out: the government will set wages. • Page 145: An employer MUST auto-enroll employees into the government-run public plan. No alternatives. • Page 146: Employers MUST pay healthcare bills for part-time employees AND their families. • Page 149: Any employer with a payroll of $400K or more, who does not offer the public option, pays an 8% tax on payroll • Page 150: Any employer with a payroll of $250K-400K or more, who does not offer the public option, pays a 2 to 6% tax on payroll • Page 167: Any individual who doesn't' have acceptable health care (according to the government) will be taxed 2.5% of income. • Page 170: Any NON-RESIDENT alien is exempt from individual taxes (Americans will pay for them). • Page 195: Officers and employees of Government Health care Bureaucracy will have access to ALL American financial and personal records. • Page 203: "The tax imposed under this section shall not be treated as tax." Yes, it really says that. • Page 239: Bill will reduce physician services for Medicaid. Seniors and the poor most affected." • Page 241: Doctors: no matter what specialty you have, you'll all be paid the same (thanks, AMA!)• Page 253: Government sets value of doctors' time, their professional judgment, etc. • Page 265: Government mandates and controls productivity for private healthcare industries. • Page 268: Government regulates rental and purchase of power-driven wheelchairs. • Page 272: Cancer patients: welcome to the wonderful world of rationing! • Page 280: Hospitals will be penalized for what the government deems preventable re-admissions. • Page 298: Doctors: if you treat a patient during an initial admission that results in a readmission, you will be penalized by the government. • Page 317: Doctors: you are now prohibited for owning and investing in healthcare companies! • Page 318: Prohibition on hospital expansion. Hospitals cannot expand without government approval.• Page 321: Hospital expansion hinges on "community" input: in other words, yet another payoff for ACORN. • Page 335: Government mandates establishment of outcome-based measures: i.e., rationing. • Page 341: Government has authority to disqualify Medicare Advantage Plans, HMOs, etc. • Page 354: Government will restrict enrollment of SPECIAL NEEDS individuals. • Page 379: More bureaucracy: Telehealth Advisory Committee (healthcare by phone). • Page 425: More bureaucracy: Advance Care Planning Consult: Senior Citizens, assisted suicide, euthanasia? • Page 425: Government will instruct and consult regarding living wills, durable powers of attorney, etc. Mandatory. Appears to lock in estate taxes ahead of time. • Page 425: Government provides approved list of end-of-life resources, guiding you in death. • Page 427: Government mandates program that orders end-of-life treatment; government dictates how your life ends. • Page 429: Advance Care Planning Consult will be used to dictate treatment as patient's health deteriorates. This can include an ORDER for end-of-life plans. An ORDER from the GOVERNMENT. • Page 430: Government will decide what level of treatments you may have at end-of-life. • Page 469: Community-based Home Medical Services: more payoffs for ACORN. • Page 472: Payments to Community-based organizations: more payoffs for ACORN. • Page 489: Government will cover marriage and family therapy. Government intervenes in your marriage. • Page 494: Government will cover mental health services: defining, creating and rationing those services.

A few readers alerted us to the fact that a state representative in North Carolina, Rep. Curtis Blackwood, published a version of the e-mail in a newsletter to constituents, telling them that while going through e-mail, he came across "some interesting information on the Democrats' big health care bill, H.R. 3200. …… While this is federal legislation and not state, the topic is of enough significance that I thought many of you would be interested in reading it." We'd refer Rep. Blackwood to our special report on viral messages titled, "That Chain E-mail Your Friend Sent to You Is (Likely) Bogus. Seriously."We can trace the origins of this collection of claims to a conservative blogger who issued his instant and mostly mistaken analyses as brief "tweets" sent via Twitter as he was paging through the 1,017-page bill. The claims have been embraced as true and posted on hundreds of Web sites, and forwarded in the form of chain e-mails countless times. But there's hardly any truth in them. We'll go through each of the claims in this message:

Claim: Page 22: Mandates audits of all employers that self-insure!False: This section merely requires a study of "the large group insured and self-insured employer health care markets." There's no mention of auditing employers, only of studying "markets." The purpose of the study is to produce "recommendations" to make sure the new law "does not provide incentives for small and mid-size employers to self-insure."

Claim: Page 29: Admission: your health care will be rationed!False: This section says nothing whatsoever about "rationing" or anything of the sort. Actually, it's favorable to families and individuals, placing an annual cap on what they could pay out of pocket if covered by a basic, "essential benefits package." The limits would be $5,000 for an individual, $10,000 for a family.

Claim: Page 30: A government committee will decide what treatments and benefits you get (and, unlike an insurer, there will be no appeals process)False: Actually, the section starting on page 30 sets up a "private-public advisory committee" headed by the U.S. surgeon general and made up of mostly private sector "medical and other experts" selected by the president and the comptroller general. The advisory committee would have only the power "to recommend" what benefits are included in basic, enhanced and premium insurance plans. It would have no power to decide what treatments anybody will get. Its recommendations on benefits might or might not be adopted.

Claim: Page 42: The "Health Choices Commissioner" will decide health benefits for you. You will have no choice. None.False: The new Health Choices Commissioner will oversee a variety of choices to be offered through new insurance exchanges. The bill itself specifies the "minimum services to be covered" in a basic plan, including prescription drugs, mental health services, maternity and well-baby care and certain vaccines and preventive services (pages 27-28). We find nothing in the bill that prevents insurance companies from offering benefits that exceed the minimums. In fact, the legislation allows (page 84) any company that offers an approved basic plan to offer also an "enhanced" plan, a "premium" plan and even a "premium plus" plan that could include vision and dental benefits.

Claim: Page 50: All non-US citizens, illegal or not, will be provided with free healthcare services.False. That's simply not what the bill says at all. This page includes "SEC. 152. PROHIBITING DISCRIMINATION IN HEALTH CARE," which says that "[e]xcept as otherwise explicitly permitted by this Act and by subsequent regulations consistent with this Act, all health care and related services (including insurance coverage and public health activities) covered by this Act shall be provided without regard to personal characteristics extraneous to the provision of high quality health care or related services." However, the bill does explicitly say that illegal immigrants can't get any government money to pay for health care. Page 143 states: "Nothing in this subtitle shall allow Federal payments for affordability credits on behalf of individuals who are not lawfully present in the United States." And as we've said before, current law prohibits illegal immigrants from participating in government health care programs.

Claim: Page 58: Every person will be issued a National ID Healthcard.False. There is no mention of any "National ID Healthcard" anywhere in the bill. Page 58 says that government standards for electronic medical transactions "may include utilization of a machine-readable health plan beneficiary identification card," to show eligibility for services. Insurance companies typically issue such cards already, but if such a standard were issued the cards would need to be in a standard form readable by computers. The word "may" is used to permit such a standard, but it does not require one.

Claim: Page 59: The federal government will have direct, real-time access to all individual bank accounts for electronic funds transfer.False. This section aims to simplify electronic payments for health services, the same sort of electronic payments that already are common for such things as utility bills or mortgage payments. The bill calls for the secretary of Health and Human Services to set standards for electronic administrative transactions that would "enable electronic funds transfers, in order to allow automated reconciliation with the related health care payment and remittance advice." There is no mention of "individual bank accounts" nor of any new government authority over them. Also, the section does not say that electronic payments from consumers is required.

Claim: Page 65: Taxpayers will subsidize all union retiree and community organizer health plans (read: SEIU, UAW and ACORN)Misleading. Page 65 is the start of a section (SEC. 164. REINSURANCE PROGRAM FOR RETIREES) that would set up a new federal reinsurance plan to benefit retirees and spouses covered by any employer plan, not just those run by labor unions or nonprofit groups. Specifically, it covers "retirees and . . . spouses, surviving spouses and dependents of such retirees" who are covered by "employment-based plans" that provide health benefits. It's open to any "group health benefits plan that . . . is maintained by one or more employers, former employers or employee associations," as well as voluntary employees' beneficiary associations (page 66). Furthermore, the aim of the fund is to cut premiums, copays and deductibles for the retirees. Payment "shall not be used to reduce the costs of an employer."

Claim: Page 72: All private healthcare plans must conform to government rules to participate in a Healthcare Exchange.True. This page begins a section setting up a new, national Health Insurance Exchange through which individuals and employers may choose from a variety of private insurance plans, much like the system that now covers millions of federal workers. Any private insurance plans offered through this exchange must meet new federal standards. For example, such plans can't deny coverage for preexisting medical conditions (page 19).

Claim: Page 84: All private healthcare plans must participate in the Health care Exchange (i.e., total government control of private plans)Partly true. Nothing like this appears on page 84. No insurance company is required to sell plans through the exchange if it doesn't want to. Any employer may choose to buy coverage elsewhere. In fact, the vast majority of employers will still be buying private plans through the normal marketplace, because only employers with 10 or fewer employees are even allowed to buy through the exchange in the first year. The limit rises to 20 employees in the second year. However, new plans sold directly to individuals will only be sold through the exchange. Individuals who currently buy their own coverage can keep those plans if they wish, and if the insurance company continues to offer them.

Claim: Page 91: Government mandates linguistic infrastructure for services; translation: illegal aliensMisleading. It's true that page 91 says that insurance companies selling plans through the new exchange "shall provide for culturally and linguistically appropriate communication and health services." The author's "translation," however, assumes that anyone speaking a foreign language or from another culture is an illegal immigrant, which is false.

Claim: Page 95: The Government will pay ACORN and Americorps to sign up individuals for Government-run Health Care plan.False: This page is the start of "SEC. 205. OUTREACH AND ENROLLMENT OF EXCHANGE-ELIGIBLE INDIVIDUALS AND EMPLOYERS IN EXCHANGE-PARTICIPATING HEALTH BENEFITS PLAN." It says a newly established Health Choices Commissioner "shall conduct outreach activities" to get people covered by private or government health insurance plans. The section says on page 97 that the Commissioner "may work with other appropriate entities to facilitate …… provision of information." But there is no authorization anywhere in the entire section for the Commissioner to pay money to any group to engage in outreach.

Claim: Page 102: Those eligible for Medicaid will be automatically enrolled: you have no choice in the matter.Partly true. Page 102 says certain Medicaid-eligible persons will be "automatically enrolled" in Medicaid (which is the state-federal program to provide insurance to low-income workers and families) IF they are not already covered by private insurance. That would happen only if they had "not elected to enroll" in one of the private plans offered through the new insurance exchanges, however. So on paper at least, they would have a choice. Also, it's estimated that one in four persons who lacks health insurance is already eligible for Medicaid or its offshoot, the state Children's Health Insurance Program, but simply haven't signed up or been enrolled by their parents.

Claim: Page 124: No company can sue the government for price-fixing. No "judicial review" is permitted against the government monopoly. Put simply, private insurers will be crushed.Half true. It's true that page 124 forbids any review by the courts of rates the government would pay to doctors and hospitals under the new "public option" insurance plan. But there's no mention of "price fixing" in the bill; that's the e-mail author's phrase. It also remains to be seen if the "public option" plan would grow to become a "government monopoly," as the author predicts.

Claim: Page 127: The AMA sold doctors out: the government will set wages.Misleading. Nothing in the bill would "set wages" for doctors in general. Page 127 says the government would ask doctors to accept below-market rates set by the government for their patients who are covered by a new "public health insurance option," just as they now are asked to do so for patients covered by Medicare. Physicians would still be free to charge what they wish for other patients, and free not to accept patients covered by the new program just as they are now free to refuse Medicare patients. That's not a choice many doctors make, however, so as a practical matter the government would be setting rates (not "wages") for many patients. On the other hand, the new "public" plan is aimed mainly at covering people who have no insurance now and can afford to pay doctors little if anything.

Claim: Page 145: An employer MUST auto-enroll employees into the government-run public plan. No alternatives.False. It's true that employers would be required to sign up their workers for coverage automatically, but it doesn't have to be the "public plan." It would be the employer-offered plan "with the lowest applicable employee premium" (pages 147- 148). This would only be the "public option" if the employer was eligible to buy coverage through the Health Insurance Exchange (not likely, at least during the first two years when only small businesses would have access), and the "public option" was the cheapest plan (which would be likely). Furthermore, while the employer isn't given an alternative, the workers are. They may reject auto-enrollment under an opt-out provision (page 148).

Claim: Page 146: Employers MUST pay healthcare bills for part-time employees AND their families.Half true. There's nothing in this section about part-time employees' families, but this provision does call for employers to contribute toward part-time employees' health insurance. The bill says that "for an employee who is not a full-time employee …… the amount of the minimum employer contribution" will be a proportion of the minimum contribution for full-time employees. This proportion will depend on the average weekly hours of part-time employees compared with the minimum weekly hours required to be a full-time employee, as specified by the Health Choices Commissioner. (For a point of reference: The minimum contribution for individual plans of full-time employees is not less than 72.5 percent of the premium of the cheapest plan the employer offers.)

Claim: Page 149: Any employer with a payroll of $400K or more, who does not offer the public option, pays an 8% tax on payroll

Claim: Page 150: Any employer with a payroll of $250K-400K or more, who does not offer the public option, pays a 2 to 6% tax on payroll.Both Partly True. The bill requires employers either to offer private health insurance coverage or pay a percentage of their payroll expenses to help finance a public plan. The 8 percent payment would indeed apply to employers with payrolls over $400,000 in the previous year, and lesser amounts would apply to smaller firms. Those with payrolls of $250,000 or less would pay nothing. But the penalty isn't incurred if an employer "does not offer the public option," as the e-mail claims. Rather, it's a penalty for not offering health insurance to employees.

[my comment: this is what conservatives were sooooooo in favor of a few years ago when it was presented as a state-government bill targeting WalMart, and only WalMart, to force them to offer health insurance to their employees instead of having them rely on Medicaid. Amazing how times change.]

Claim: Page 167: Any individual who doesn't have acceptable health care (according to the government) will be taxed 2.5% of income.True. This is the mechanism in the bill to enforce the individual mandate requiring everyone to have insurance. A person who doesn't have insurance that meets minimum benefit standards (or other acceptable coverage, such as a plan that was grandfathered in) would pay a penalty of 2.5 percent of modified adjusted gross income for the year. The total penalty can't exceed a national average premium for individual coverage, or family coverage if applicable.

[my comment: by my calculation, someone earning $100,000 would be paying a penalty equal to the current cost of the cheapest policy I've found for my age range. Those earning average incomes would pay a penalty of far less than the premium.]

Claim: Page 170: Any NON-RESIDENT alien is exempt from individual taxes (Americans will pay for them).False."Non-resident aliens" are generally those who have spent less than 31 days in the U.S. during the year. The claim that "Americans will pay for them" assumes that such visitors would somehow be getting federal benefits that would cost taxpayers money. In any case, they are not "exempt from individual taxes" at all. Under current law, the Internal Revenue Service says: "If you are a nonresident alien, you must file Form 1040NR (PDF) or Form 1040NR-EZ (PDF) if you are engaged in a trade or business in the United States, or have any other U.S. source income on which the tax was not fully paid by the amount withheld." All that page 170 says is that non-resident aliens who don't obtain health coverage don't have to pay an additional 2.5 percent federal tax that would apply to U.S. workers who fail to get coverage, or to immigrants who are working here legally under green cards and who fail to obtain coverage. The tax is spelled out in subsection (a) starting on page 167.

Claim: Page 195: Officers and employees of Government Health care Bureaucracy will have access to ALL American financial and personal records.False. This section of the bill discusses "Disclosures To Carry Out Health Insurance Exchange Subsidies." It says that government employees of the health insurance exchange will have access to federal tax information for purposes of determining eligibility for affordability credits available for low- and moderate-income Americans. In other words, in order to qualify for a government subsidy to purchase health insurance, the government needs to confirm your income. And, no surprise, the government already has access to your federal tax information. The bill also says nothing about "ALL …… financial and personal records." Instead it says "Such return information shall be limited to——(i) taxpayer identity information with respect to such taxpayer, (ii) the filing status of such taxpayer, (iii) the modified adjusted gross income of such taxpayer (as defined in section 59B(e)(5)), (iv) the number of dependents of the taxpayer, (v) such other information as is prescribed by the Secretary by regulation as might indicate whether the taxpayer is eligible for such affordability credits (and the amount thereof)." The bill goes on to limit use of this information "only for the purposes of, and to the extent necessary in, establishing and verifying the appropriate amount of any affordability credit …… and providing for the repayment of any such credit which was in excess of such appropriate amount."

Claim: Page 203: "The tax imposed under this section shall not be treated as tax." Yes, it really says that.Misleading. What this actually says is: "The tax imposed under this section shall not be treated as tax imposed by this chapter for purposes of determining the amount of any credit under this chapter or for purposes of section 55," which deals with the Alternative Minimum Tax. It would limit the ripple effects of the new taxes the bill would impose on individuals making over $350,000 a year.

Claim: Page 239: Bill will reduce physician services for Medicaid. Seniors and the poor most affected.

Claim: Page 241: Doctors: no matter what specialty you have, you'll all be paid the same (thanks, AMA!)Both False. Both of these claims pertain to Section 1121, which updates the physician fee schedule for 2010 for Medicare. It doesn't "reduce physician services for Medicaid" (which wouldn't pertain to seniors anyway); instead it modifies a section of the Social Security Act that defines physicians' services. The section also doesn't say that doctors will be paid the same "no matter what specialty you have." Instead it sets up two categories of physician services with different growth rates for fees under those categories. As the Kaiser Family Foundation says of this section of the bill: "Allows the revised formula to be updated by the gross domestic product (GDP) plus 2% for evaluation and management services and GDP plus 1% for all other services." The measure will cost $228.5 billion over 10 years, according to the Congressional Budget Office and Joint Committee on Taxation.

Claim: Page 253: Government sets value of doctors' time, their professional judgment, etc.Misleading. It's true that page 253 refers to "relative value units" to be used when determining payment rates for doctor's services, and that such RVUs would weigh factors "such as time, mental effort and professional judgment, technical skill and physical effort, and stress due to risk." But this is nothing new; the government already uses RVUs when setting rates it will pay under Medicare. For example, the RVUs assigned to a colonoscopy are currently double the RVUs assigned to an intermediate office visit. In fact, page 253 is part of a section (Sec. 1122) that sets up a process for correcting existing but "potentially misvalued" rates.

Claim: Page 265: Government mandates and controls productivity for private healthcare industries.Misleading. This claim doesn't even make sense. How can anyone "mandate" that somebody else be productive, or "control" how productive they are? The author has simply misunderstood what this controversial item would do. In fact, page 265 is the start of a section (Sec. 1131) that is among several designed to slow future growth of Medicare payments to help offset the cost of the bill. It would require that "productivity improvements" be taken into account when setting annual "market basket" updates to Medicare rates for hospital-based services. The hospital industry has estimated this would translate into a 1.3 percent cut next year and a total of $150 billion in reduced payments over 10 years, and is opposed to it.

[my comment: the hospital industry is opposed to something that would reduce its profits. Why wouldn't they oppose something that means smaller executive bonuses?]

Claim: Page 268: Government regulates rental and purchase of power-driven wheelchairs.Misleading. What page 268 does is to stop Medicare for paying for "mobility scooters," which have been widely marketed as a Medicare-financed benefit, leading to ballooning costs to the program. They would no longer qualify as a "power-driven wheelchair." Only a "complex rehabilitative power-driven wheel chair recognized by the Secretary" would be covered. The Congressional Budget Office estimates this will save the government $800 million over 10 years (see page 2).

Claim: Page 272: Cancer patients: welcome to the wonderful world of rationing!False. This page merely calls for a study of whether a certain class of hospitals incur higher costs than some others for the cancer care they deliver. It also says the secretary of HHS "shall provide for an appropriate adjustment" in payments "to reflect those higher costs." It's hardly "rationing" to pay hospitals more to compensate for higher costs.

Claim: Page 280: Hospitals will be penalized for what the government deems preventable re-admissions.True: This does say that "the Secretary shall reduce the payments" to hospitals with too many "potentially preventable" readmissions of patients that they previously had discharged.

[my comment: haven't we been screaming for years about things like "drive-by mastectomies" and new mothers being kicked out of the hospital hours after giving birth, because these often lead to complications requiring re-admission? Why is it now a bad thing that hospitals are required to keep patients until they are well enough to go home?]

Claim: Page 298: Doctors: if you treat a patient during an initial admission that results in a readmission, you will be penalized by the government.False. That section is part of a list of potential physician-centered approaches to reducing excess hospital readmissions. The bill states that the secretary of Health and Human Services will conduct a study on the best ways to enforce readmissions policies with physicians. One of the approaches the secretary must consider is the option to reduce payments to physicians whose treatment results in a hospital readmission. Another is the option to increase payments to physicians who check up on recently released patients. Neither of these approaches is mandated in the bill –– what's mandated is that the secretary consider them, among others.

[my comment: what is wrong with sanctioning a doctor whose treatment (or lack thereof) causes a patient to get sicker and require a second hospitalization?]

Claim: Page 317: Doctors: you are now prohibited for owning and investing in healthcare companies!False. It's already illegal, with certain exceptions, for doctors to refer Medicare patients to hospitals, labs, medical imaging facilities or other such medical businesses in which they hold a financial interest. Page 317 would modify an exception to that "self-referral prohibition" for rural providers, and says doctors can't increase their stake in an exempt hospital after the bill becomes law.

Claim: Page 318: Prohibition on hospital expansion. Hospitals cannot expand without government approval.False. Expansion is forbidden only for rural, doctor-owned hospitals that have been given a waiver from the general prohibition on self-referral. It does not apply to hospitals in general. The bill provides for exceptions to even this limited expansion ban (page 321).

Claim: Page 321: Hospital expansion hinges on "community" input: in other words, yet another payoff for ACORN.False. Page 321 says rural, doctor-owned hospitals that are exempt from the Medicaid self-referral prohibition can ask to be allowed to expand under rules that must allow "input" from "persons or entities in the community." Under that language, anybody in the community could offer their opinion, but nobody –– not ACORN or anybody else –– would be paid for it.

Claim: Page 335: Government mandates establishment of outcome-based measures: i.e., rationing.Misleading. This section does deal with establishing quality measures for Medicare. It does not make any recommendations for treatment, or empower anyone to make treatment recommendations based on those measures. The only effect of these outcome-based measures established in the bill would be ranking and potential disqualification of underperforming Medicare Advantage plans –– that's disqualification of the plans, not of any medical procedures.

Claim: Page 341: Government has authority to disqualify Medicare Advantage Plans, HMOs, etc.True. The bill allows for the possibility of disqualifying underperforming Medicare Advantage plans, which include Medicare HMOs. Medicare Advantage plans are private health plans that provide Medicare benefits. Under the bill, the secretary of Health and Human Services has the authority to disallow plans that are providing low-quality care under the new quality measures (which include evaluations of patient health, mortality, safety and quality of life). If a plan is disqualified, this will not leave seniors without care. The Kaiser Family Foundation reports that "virtually all" Medicare beneficiaries have access to at least two Medicare Advantage plans, and most have access to three or more. In 2008, 82 percent of beneficiaries had access to six or more private fee-for-service plans, one type of Medicare Advantage plan (along with HMOs, PPOs and medical spending accounts). Beneficiaries are also always free to return to the regular Medicare fee-for-service program.

Claim: Page 354: Government will restrict enrollment of SPECIAL NEEDS individuals.Misleading. Insurance companies already restrict enrollment in so-called "special needs" plans, a special category of Medicare Advantage plans that were created in 2003. Page 354 merely extends the authority to do that beyond the end of next year, when it was set to expire. Furthermore, what's being restricted isn't the number of patients, but the type of patients. Plans can be restricted to accepting only those patients who fall into in one or more special categories. These include those who are institutionalized (think, nursing homes), those who qualify both for Medicare and Medicaid (think, both low-income and over age 65) and those with severe or disabling chronic conditions such as diabetes, emphysema, chronic heart failure or dementia. And of course, this has nothing to do with children with learning problems.

Claim: Page 379: More bureaucracy: Telehealth Advisory Committee (healthcare by phone).Misleading. The advisory committee would not be a "bureaucracy" or have any administrative functions, but instead would bring together experts from the private sector to give advice on how Medicare and Medicaid should treat the practice of medicine via telecommunication, something used in rural hospitals and such places as cruise ships, battlefield settings and even on NASA space missions. Pages 380-381 call for the committee to consist of five "practicing physicians," two "practicing non-physician health care workers" and two "administrators of telehealth programs."

Claim: Page 425: Government will instruct and consult regarding living wills, durable powers of attorney, etc. Mandatory. Appears to lock in estate taxes ahead of time.

Claim: Page 425: Government provides approved list of end-of-life resources, guiding you in death

Claim: Page 427: Government mandates program that orders end-of-life treatment; government dictates how your life ends.

Claim: Page 429: Advance Care Planning Consult will be used to dictate treatment as patient's health deteriorates. This can include an ORDER for end-of-life plans. An ORDER from the GOVERNMENT.

Claim: Page 430: Government will decide what level of treatments you may have at end-of-life.All False. These six claims are a twisted interpretation of a provision in the bill that says Medicare will cover voluntary counseling sessionsbetween seniors and their doctors to discuss end-of-life care. Medicare doesn't pay for such sessions now; it would under the bill. End-of-life care discussions include talking about a living will, hospice care, designating a health care proxy and making decisions on what care you want to receive at the end of your life. Doctors do the consulting, not the "government" or a "bureaucracy." The e-mail author's assertion that the bill calls for "an ORDER from the GOVERNMENT" for end-of-life plans rests on language about a patient drawing up such an order stipulating their wishes, and having that order signed by a physician. There's nothing about "an order from the government." The bill defines an order for life-sustaining treatment as a document that "is signed and dated by a physician ……[and] effectively communicates the individual's preferences regarding life sustaining treatment." See our article "False Euthanasia Claims" for more on such assertions.

Claim: Page 469: Community-based Home Medical Services: more payoffs for ACORN.False. This section defines the term "community-based medical home" as a "nonprofit community-based or State-based organization" that "provides beneficiaries with medical home services." ACORN does not provide medical home services. The section goes on to say such a medical service is one that "employs community health workers, including nurses or other non-physician practitioners, lay health workers, or other persons as determined appropriate by the Secretary, that assist the primary or principal care physician or nurse practitioner in chronic care management activities." The only thing ACORN has in common with that description is the word "community." It's a community organization that offers services such as free tax preparation help and first-time home buyer counseling for low- and moderate-income people. It also works to register people to vote, and a few of its canvassers have been investigated for registration fraud, a point of concern during the presidential campaign.

Claim: Page 472: Payments to Community-based organizations: more payoffs for ACORN.False. This section is referring to community-based medical homes.

Claim: Page 489: Government will cover marriage and family therapy. Government intervenes in your marriage.Half true. It's true that pages 489 and 490 make state-licensed "marriage and family therapist" services a covered expense "for the diagnosis and treatment of mental illnesses." But the therapists wouldn't be employed by the government, and there's no requirement for anybody to receive their help. So the claim that this would mean that "government intervenes in your marriage" is false.

Claim: Page 494: Government will cover mental health services: defining, creating and rationing those services.Misleading. The provision amends Section 1861 of the Social Security Act laying out what services Medicare will cover. It expands coverage for mental health services, stipulating that a "mental health counselor" who can perform mental health counseling is someone with a master's or doctorate degree, a state license, and two years of practice as a counselor. Is this the government "defining" mental health services? Well, it's certainly the government defining what government programs will cover.–– by Brooks Jackson, Lori Robertson and Jess Henig, with D'Angelo Gore